Dr. Cheney comments on the XMRV workshop

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Senior Member

>"Perhaps most interesting of all was what happened with the injection of a bolus of foreign peptides into macaques that had apparently completely cleared the virus from blood. There was a huge reactivation of infectious virus in the blood proving that latent but persistent virus is just below the surface and that XMRV infection cannot be completely cleared from all reservoir sites. The peptide injection mimics an acute infection (? borrelia or the flu), an immunization or even acute mold exposure.

A quick translation:

A lot of times, the virus sits around hiding and not doing any harm for long periods of time.

Things that can cause it to go active and start doing harm:

* A flu. (Fortunately for us, ME/CFS sufferers don't get many flus after the initiator one. Maybe that's a purposeful strategy of our bodies not to cause it to be more active.)

* A Lyme infection. (Hard to get that under control. A constant XMRV activator, for those of us who have Lyme in residence.)

* A vaccine. (Best not to get those, maybe.)

* An acute mold exposure.

Moral of the story:

Staying in a moldy place is going to keep constant pressure on the XMRV to stay activated.

If you want it to go latent, getting away from the mold would be a good idea.

Kudos for Erik for figuring this out and explaining the theory to Dr. Cheney, 25 years ago (almost to this exact date).

Kudos to Dr. Cheney for finally understanding the theory and making a public statement about it soon afterward.

Senior Member

I know Cheney doesn't mention this, but I would also think that in addition to mold, there may be other environmental factors like high pesticide, fungicide, or other chemical exposures, (or heavy metals) may play a role as well.

Senior Member

This part raised qualified Cheney's suspicions of XMRV being the most infectious retrovirus known to man:

It would seem that bronchial secretions, nasal secretions and sex organ secretions as well as faeces and urine are well positioned to help the virus to spread itself to other macaques, especially if activated.

Senior Member

Here are a random selection of comments from Erik from over the years on this topic.

And this, if anyone cares, is just a tiny tip of the iceberg.

There's a WHOLE LOT more to this biotoxin phenomenon, in the event that anyone is interested.

I hope it doesn't take another 25 years for folks to figure out that they should be.

Best, Lisa

*

I never claimed I discovered the cause of CFS.

During the epidemic, I told Dr. Cheney and Dr. Peterson that I had a progressive and inexorably increasing reactivity to mold. I theorized that the reactivity was "infection induced.”

When they told me that CFS was viral, I asked why a virus would care about mold and when they said that it wouldn't, I replied, "Then whatever’s got me must be a bacteria because it seems to care a great deal about mold.”

I have no idea what causes CFS and am not qualified to find out.

All I know is that when I was fighting for my life and had nothing else to try, mycotoxin avoidance worked....and that I have never met a CFSer yet who failed to complain about the very clues that led me to try this crazy scheme.

-Erik (2004, Locations)

*

I have never claimed anything more than what I have seen and limit myself to the observations I make and can show to others.

I don't use the words "causes CFS.”

I only say that the mycotoxin connection is a verifiable part of the overall phenomenon, but that it's only visible to those who are willing to see and test the clues.

-Erik (2006, Locations)

*

Nowhere did I assert that mold is the sole cause of CFS symptoms.

I have I never even used that word "cause," for reasons of the instant rejection that using this word induces.

For decades, I have said that I simply observed that others who were in the original CFS cohort shared a similar response to certain molds but they were unaware that it was mold they were responding to.

-Erik (2007, CFSResearch)

*
AIDS patients know that when their CD4/CD8's fall below a certain ratio, their viral titers shoot up and secondary infections emerge. Sometimes treatment of these infections restores enough immune surveillance to restore the ratio and knock down the virus.

So there may be many avenues for treatment that don't specifically address the fundamental dysfunction but have an apparent effect.

I suspect that when CFSers try some crazy thing that has a wondrous effect, as mycotoxin avoidance has for me, it is just finding one of many ways to climb one rung up on the immunological ladder.

I didn't say that mold was the cause.

I said that the vast commonality of this irritant is a clue to the etiology of the illness.

The AIDS researchers know precisely what CD4-CD8 ratio allows the poxvirus to blaze into activity.

Virtually anything that boosts immune function just barely over the threshold that keeps Molluscum in check will drive it back into latency. It doesn't matter what it was that boosted the immune system - could be just about anything.

If one didn't know this mechanism, people trying to "cure" Molluscum Contagiosum would see success by many different "cures" and give credit to each one that worked indiscriminately.

In 1985, when I told Dr. Cheney about this weird effect, he said CFS was viral. I just replied that for some reason, mold had a specificity to it that made it worthy of investigation.

That specificity is the reactivation of latent infections of almost any sort.

-Erik (2007, Email)

*

People get so confused when I talk about my mold experience and still say that CFS is the exact illness that Dr. Peterson called the CDC for.

I never said mold causes CFS. Just that CFSers seem to be severely affected by mold.

All I was doing is taking advantage of this knowledge to reduce my pain as much as possible.

Since I'm one of Dr. Peterson’s cohort that the strange Human B Cell Lymphotropic virus (later to be renamed HHV6 and then HHV6a) was found in, it'd be kind of silly for anyone to think I was saying that mold is the cause of everything.

What I said to Dr. Cheney and Dr. Peterson was that while they were figuring out what the "Yuppie Flu" thing was, I was going to exploit the benefit of avoiding the influence of that mysterious factor which blows in on the wind.

-Erik (2008, CFSU)

*

People just hear what they want to hear, so they can think what they want to think.

I keep insisting that CFS happened exactly as described in Osler's Web, which means that we had a novel "HBLV" virus that Gallo-Salahuddin had just stumbled over in AIDS patients... and yet when I talk about "The Mold Connection to CFS,” people twist it into, "Erik says mold is the cause of CFS.”

Well, without the HBLV, the illness I think of as CFS wouldn't be what it is. So mold alone is clearly not what I am saying. And I use the word "mediated" instead of "caused" to describe the effects of mycotoxins on the cytokine cascade.

Doesn't work. People just keep hearing, "Erik says mold - mold - mold is everything,” and there's just no way to stop 'em.

-Erik (2008, CFSU)

*

What I said was "an effect from mold.”

People interpreted this as, "Erik says mold causes."

And since mold is well known not to "cause,” mold was ruled out and the clue was relegated to irrelevance.

-Erik (2009, Locations)

*

From the inception of CFS, doctors have told me that mold doesn't matter, because this kind of reactivity is just the result of something else.

So I said, "Fine. While you figure out what that something else is, I'm going to stay away from the mold."

There's no doubt in my mind that this was a good choice.

Who cares whether it is a result of P450 decoupling or anything else, if one can stay away from it and get a life back?

-Erik (Email, 2010)

*

My exact words were, "Why would a virus care about mold?", and when Dr Cheney said that a virus would not have any particular specifity, in terms of a response to mold, I rejoined "Then it must be a bacteria, because whatever's got ahold of me seems to care a GREAT DEAL about mold".

Right next door to Dr Cheney and Dr Peterson's old Alder st office is a "China Chef" restaurant. I got a fortune cookie which says "The simplest truths are the last to be believed."

Senior Member

I know Cheney doesn't mention this, but I would also think that in addition to mold, there may be other environmental factors like high pesticide, fungicide, or other chemical exposures, (or heavy metals) may play a role as well.

Senior Member

dr mikovits also said hormones switch the virus on, thats why women are sicker during menstruation and at different times in there monthly cycle.

Everytime this virus switches on, it does damage in the body, the body tries to heal this damage but never gets the chance because something will switch the virus on again! (hormones/viruses/toxins/stress)

A shadow of my former self

OK, the virus was cleared in the monkeys' blood and tissues, but could be reactivated by peptides.
Doesn't the fact that it could be reactivated mean it's still somewhere? I assume this is the reservoirs that I see references to repeatedly. What are these reservoirs and why are they not considered tissues?

The big question in my mind is whether the macaques exhibited symptoms of CFS, or whether the monkeys appeared symptom free (like the 4-7% of healthy controls in the studies that had XMRV). That is, were the macaques in a healthy state after infection and reactivation, or were they severely disabled, with CFS like symptoms. If they appeared symptom free, then this may indicate that XMRV needs something else to trigger CFS. For instance, a person could become infected with XMRV, the virus spreads throughout their systems, is cleared from most of them and then remains dormant. When an infection come along the virus may activate, then cleared again without any symptoms. Then when a trigger agent comes along (say a particular type of infection like EBV, or some of the other infections Dr Komaroff discussed in his video about the Australia study), it does something different, something not yet seen in the macaques. For instance, the trigger virus + XMRV may form a chimera virus (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC191473/pdf/713328.pdf) that damages the anti-viral pathway in the immune system that results in CFS. This would explain why CFS often seems to follow some other illness. It would also explain why most people infected with the virus remain symptom free.

Watchoo lookin' at?

most of the info on the macaque study has been known to us for months (6 or more) now. It was stated that they didn't get sick, but it was never revealed how they tested that. I suspect that there were simply no 'obvious' signs of illness, but who knows. With many people with CFS there are no obvious signs of illness either. Even with a whole slew of standard tests, the macaques could have had a CFS type illness going on but still be declared healthy.

Senior Member

OK, the virus was cleared in the monkeys' blood and tissues, but could be reactivated by peptides.
Doesn't the fact that it could be reactivated mean it's still somewhere? I assume this is the reservoirs that I see references to repeatedly. What are these reservoirs and why are they not considered tissues?

He actually wrote that the virus was cleared from the blood, not from the blood and tissues. So the idea is that there are reservoirs in the tissues, though it may be hard to find signs of the virus in the blood. The peptides caused the virus that was in the tissue reservoirs to flare, and then they could be found in the blood again.

Senior Member

"The effect of XMRV infection over time was not studied in the macaque but a similar gammaretrovirus called Feline Leukemia virus (FeLV) has been well studied in cats for decades. I will in another post describe a most interesting talk at this conference by a veterinarian on the life history of infection by a gammaretrovirus in cats."

Has he posted this yet? I'd love to read it. If XMRV behaves similarly to FeLV, it might mean a very short time period to a viable vaccine. Effective vaccines for FeLV have existed on the market for years and they are given to most if not all domesticated cats. Translational research is a good thing(tm).

And OMG can someone do a study where they biopsy (in human) the tissues where they found XMRV in the highest concentrations according to the monkey study? Seriously, why are they still scrambling around looking in the blood. Dig out all of Dr. Chia's stomach biopsy's and start testing for XMRV.

Senior Member

most of the info on the macaque study has been known to us for months (6 or more) now. It was stated that they didn't get sick, but it was never revealed how they tested that. I suspect that there were simply no 'obvious' signs of illness, but who knows. With many people with CFS there are no obvious signs of illness either. Even with a whole slew of standard tests, the macaques could have had a CFS type illness going on but still be declared healthy.

I think that was an excellent point. We can be so exhausted to the point of nearly passing out but people can look at us and think we are fine!! so who knows how those monkeys were truely feeling. Had they timed just how much per day each monkey played?? for comparison?? i doubt it.

i hate animal studies for reasons such as this.. i dont think they can be really ever truely accurate on just really what is going on as far as symptoms etc

Senior Member

And OMG can someone do a study where they biopsy (in human) the tissues where they found XMRV in the highest concentrations according to the monkey study? Seriously, why are they still scrambling around looking in the blood. Dig out all of Dr. Chia's stomach biopsy's and start testing for XMRV.

This has been always the theory Ive believed and my thinking wont ever change on this unless its ever proven to be wrong. I know in my own case there are multiple factors involved including something genetic.
.........

slaydragon .. i cant see how mold is much different to other factors in CFS/ME and in the importance in removing any of the factors which are "stressors" on our bodies in this illness.